Sunday, September 27, 2009

Last week I spent a goodly amount of time talking to a family who lost their 18 year old son a year ago to testicular cancer. It was a harder discussion for me than most, in the sense that I did not treat the boy, but he was a very close friend of a family member. It was a tragic situation, much more so than the usual, given his age, and the fact that with his diagnosis, most patients do well, at least these days. Reviewing the medical facts, however, it was very clear that he had an unusually aggressive form of the disease, and no matter what was done, the outcome would have been the same. What was also clear was that the grieving family and friends left behind were left wondering. Could something have been different?

The thing that is more disturbing to me is that some of that wondering was worsened or maybe even brought on by the well intentioned (I hope) remarks made by the treating team. Something probably said in passing, yet in those situations, every last word is hung on to like a verse from Sacred Scripture. In this case, "his treatment was delayed". While technically true, it speaks volumes that it was necessary for the doctor to point out. The delays mentioned were due to the Holidays, or sometimes to the side effects. All legitimate reasons to delay, and the length of the delays would not have had an impact on the response. But here we are, a year later, and the suffering caused by those words continues. Maybe it was the doctor's way of assuaging his own uncertainty at why it went as it did. Maybe it was completely innocent. The effects were anything but.

It brought to mind other times I have had to "debrief" with a grieving family. When a friend died in his sleep in his 40's, the autopsy showed undetected heart disease. Did we all ignore his heartburn too readily as overeating? Would we do differently had we thought....? Did we miss something? 20-20 hindsight is usually a lot more clear than we would like.

Most of us in the medical profession don't do much debriefing, either with patients, families, or colleagues. I think it is much to our own loss. So much could be gained, and it shows the solidarity we share with the family at their loss. It is our loss too, after all. Not to the same degree, but nonetheless, clearly we have many whom we care for that touch us deeply, for whatever reason. Even those with a more casual relationship can effect us significantly, and those for whom we think we maybe could have done better, well, we can hardly go there for fear of losing our own sanity.

I am happy I was able to relieve some of the doubts of this boy's family. I pointed out that they clearly honored his wishes, and showed him a deeper form of love than many could have done by allowing him the degree of control over his treatments that they did. There is no higher love or honor we can offer.

Casual comments can wound very deeply. Debriefing can be healing. We in the profession should debrief more often and choose our words more carefully . I am glad we do as much as we do in hospice and palliative care.

Saturday, August 15, 2009

With all the debate going on over health care reform, one area that has prickled me to no end is the recent misinformation about advance care planning. Whether or not President Obama wants to ration care, whether or not this process is paid for, advance care planning is all about informed consent and choices. One of the hats I wear at work relates to this very process, so I feel like I know a little bit about this.

First of all, let it be known far and wide that simply having an advance directive does NO good. It doesn't impact the care you do or don't receive, and most of the time, it can't even be located, let alone honored.

What DOES make a significant impact is HAVING THE DISCUSSION. Talking with a knowledgeable expert about what options are available, the pros and cons, risks and benefits, likely outcomes, etc. Talking with your physician and your family about your values. This is what advance care planning is. Advance directives are the documents that result from the planning. (And just a personal plug, if you have a Living Will, you might as well toss it. It is very limited and not helpful. Get a Power of Attorney for Healthcare.)

The discussion needs to happen with the physician, but what physician these days has the time to go in depth about these issues? So the current state is to ask patients to "sign this form", and we call it "informed consent". If you've ever had a medical procedure, you have experienced this. Tell me that your doctor truly spent the time to inform you of the issues, and then asked permission. It just doesn't happen.

But I digress. The issue again is about choices. I saw a dying young man recently who had pain written all over his face. He has been on multiple regimens for his pain, with varying degrees of success. Clearly, what he is doing now isn't working. Yet, each time I tried to discuss another option with him, he refused. It wasn't necessarily fear of drowsiness from strong pain relievers, or not wanting to take any more pills. For this young man, it was existential. He had been healthy, and could not understand why this had happened to him. He was struggling with issues of meaning and spirituality, and though I tried to describe for him how he might be better able to deal with those issues if his pain was less severe (and the converse is also true), he would have none of it. I knew I could help him feel better. He chose not to. Who am I to judge?

Another recent encounter was with an elderly man whose family did NOT want to tell him how sick he was, let alone that he was on hospice. This man was alert, and knew what was going on around him. Yet, when I specifically asked him how much he wanted to know about what was happening to his health, he deferred to his family. He wasn't trying to avoid it and wasn't in denial. He knew how bad his health had been the last few years. But this was his informed choice, to defer the discussion to those he trusted.

Cultural issues abound. An Asian family wanted me to not talk about ANYTHING negative around their dying mother. They truly believed they would witness a miracle. They were open to palliative treatment, but not to talking about dying.

Lest anyone get the wrong idea, I do NOT in ANY WAY support euthanasia or physician assisted suicide. These are morally reprehensible to me. That is not the choice I am talking about here. But for so long, we have tried to treat chronic progressive disease the same way we treat acute life threatening illness, we have forgotten to note the differences. We can and should continue to use aggressive therapies when appropriate. But who is the one who should really have the final say as to what appropriate is? A patient who doesn't know all the options cannot meaningfully participate in this discussion with the expert physician. Docs need to get over themselves and start being honest with patients. We don't take away their hope, even if they are terminal. The disease did that. We are helping them prepare, and this benefits everyone. And guess what? It turns out to cost less according to all the studies out there. We should do the advance care planning because it is the right thing to do, and happens to have financial benefit, and keep the financial issues secondary, where they belong. Then we won't have all the debates and misinformation about Death Panels. Patients will be well cared for, and when their lives are ending, they can be comfortable, and surrounded by love.

Sunday, August 2, 2009

I grew up in a blue collar town near St. Louis. We weren't considered a suburb, because people fled the big city to get TO the suburbs. No one fled TO our town; just the opposite. Nonetheless, we were close enough to be near the "big city" but far enough away that I never considered myself an urbanite.

Medical school was in Chicago. Moving there was one of the scariest days of my life. I told all my friends that if I didn't get mugged, then I wouldn't really have felt like I had lived in "the City". I very much feel like I lived in "the City" after getting rolled for a sack of flour, a gallon of milk, and some pocket change by a group of kids.

What does that have to do with NYC? I am not a big city person. They are fun to visit on occasion, and there are loads of things to do, but I am very happy to return home from them. Several years ago, we took a whirlwind trip to NYC to see CATS on Broadway before the show closed. It was a short trip, but the show was wonderful. The song "Memories", of course, was one of the highlights. Memories in NYC can be powerful.

My oldest child is there now, and we went to visit him recently. While there, we visited Ground Zero. My wife wasn't anxious to go there, as she thought there would be nothing to see. I wanted to go anyway, and we had the time and it was a quick subway trip, so we went. Right now, the site itself really ISN'T that much to see. A huge construction site, much like any other big city construction site might be. However, to the west is the Memorial museum, where there are many of the flyers, photos, paper cranes from Hiroshima survivors, etc. And to the South remains St. Paul's, the church that, though directly across the street from the Twin Towers, was untouched by their fall. Interestingly (to me), there is a pew that George Washington used in that church. There, too, are many memories of the events of that fateful day.

I was surprised by how much the experienced touched me. As I reflected on where I was on 9-11, what we all experienced that day, and how very many lives were effected that day, I was filled with a mixture of sadness, hope, anger, and a large dose of disappointment. The cots where the volunteers slept when they could, the pictures, the firemen's tools, the mangled metal, and all the rest are powerful memories.

But what REALLY was the most powerful emotion is the grief that this epic event is all but gone from our collective memory. It has been almost 8 years, I know. Time heals, I know. It has been about 5 years since my dad died, and just over a year for mom. I know that memories change with time. But with something this big, how can we as a nation be so calloused as to not be out there every day with a mixture of sadness and pride over this? I don't get it. Not at all. Everyone should go there; seeing it brings it home, makes it real. The memory becomes tangible, and the experience can teach us so much.

I know this isn't really hospice related, but there is at least a tenuous connection: no one knows the day or the hour of the end of their lives. I tell patients this all the time when I am giving them the prognosis talk. I could walk out their door and get run over. They could have a fatal stroke tonight, notwithstanding their terminal illness. An insane person with a mission could blow us all to pieces next week. Live life like it is ending soon, because, after all, it is.

The song from CATS is bittersweet, talking of memories of glories long gone, yet looking forward to the future. The lessons of 9-11 should do the same. And the lessons of the lives we touch every day should too.

Friday, July 17, 2009

Chester the chocolate lab died this week. I first met Chester when I was shuttling my youngest back and forth to the rural farm where she took riding lessons. The lane from the "hard road" to the barn was fairly long, and Chester ran full tilt toward the car's front wheels. It was only after this scene repeated itself every trip that I realized this was no usual creature. He was dumb. He did not seem to comprehend that a 3000 lb metal monster could possibly hurt him. After all, this nice young girl always was inside it, ready to give the horses (and the dogs) treats! With apologies to the dog in the currently popular movie, I truly believe Chester to be the dumbest dog in the world, or at least in the top (bottom?) 2%. His owners agree.

Sometimes, as I would be sitting in the car, windows down, waiting for the lesson to end and my daughter to emerge, Chester would leap around and chase unseen things. I personally think he may have had doggie schizophrenia, and was following "voices", but the owners said he liked chasing insects. When he tired of this activity, he would almost always top off his romp with a leg raised and a bodily function performed on one of my tires.

The lessons were twice a week, and my wife and I would trade shuttle duties, so I didn't really spend all that much time with this critter. I was surprised, then, at how badly I felt when I learned that Chester had been (you guessed it) run over by a car and killed. He wasn't that old, certainly not very slow, and the driver clearly had no fault in the accident. This dog, however dumb, was always very happy and energetic, and was, in fact, the quintessential dog: slobbering, unashamedly loving all God's fellow creatures, living or inanimate. It pains me to believe that unconditional love that strong has left this world.

It also reminds me that, like so very many of us, Chester died the way he lived. I have had multiple experiences of patients who live in houses where I am certain there is no electricity or running water, and conditions for their end of life care are less than optimal, but they love their lives for what they are, not expecting anything different. Or those whose lives have been lived "in the fast lane", and they die there as well. Those who deny they will ever die, and struggling to the last breath, and those who surround themselves with chaos during their lives so why would we expect anything less in dying?

Another three creatures died in my yard today. A small bird had built a nest in a window box. We discovered this fact when the mother bird flew out as we were watering. The nest was quite small, and difficult to see, but we watched it and indeed, saw three eggs. A great wind blew the whole box over today, and the hatchlings did not survive the fall. This, too, struck me in places inside myself that I didn't expect it to. How unfair! How tragic! Poor helpless defenseless birds. Yet these, too, died as they lived...in a precarious situation the mother bird chose for them.

My favorite newscaster of all time died today. I don't know the details other than he was 92, and had been near death at least for the week since the whole Michael Jackson and Farrah Fawcett debacle. But if he, too, died as he lived, his last words could very well have been, "And that's the way it is, Friday, July 17, 2009"

Sunday, July 5, 2009

I was at the gym yesterday, on the 4th of July. Independence Day. While on the elliptical, the TV had ESPN on, and being that it was 70 years ago that day that Lou Gehrig made his famous farewell speech, they were showing some of the details of his life's story. I don't typically watch ESPN, but thought it was worth a look, given that the disease that carries this man's name is one of the more common that I see in hospice patients. Now, I haven't done any research on what was said, but it struck a chord with me. Lou was apparently diagnosed at Mayo Clinic. Not much was known about the disease at that time (though I'm not sure a lot has changed in 70 years...more on that later). The show went on to talk about how, after his retirement from the game he loved, the man sincerely believed that he would get well. His wife and his doctor from Mayo carried on a correspondence in which they conspired to keep the truth from him so as to "not take away his only hope". Lou also wrote to the doctor, describing people he had met who "got better", yet the doctor did not even tell the man that those he was describing had a different condition. It wasn't until very late in his disease that his letters reflected a knowledge of the inevitable truth. He faced that truth with character and strength, and I deeply wonder what would have been different for this man had his family and his doctor been truthful.

Fast forward 70 years. I had a call from a patient later that day. She has a complicated illness about which I will spare you the details. She is very much ready to die, but her family is most definitely NOT ready to let her go. There is, thankfully, in this case, no "conspiracy of silence" as I see in some families with differences of opinions, and as was seen in Lou Gehrig's case, but there is clearly a conflict of feelings. I am certain these feelings have very deep roots, who knows on what basis. Anyway, the patient wanted to stay home and let nature take its course, yet the family wanted to take her to the hospital for treatment "in case there was something that could be done". The patient, though it was not what she might have otherwise chosen, wanted to make sure her family's wishes were followed, and agreed to go in to be checked out. Her family's feelings were more important to her than her own wishes.

I don't think a lot has changed in 70 years. We still can't cure ALS, Lou Gehrig's disease. Patients may live a bit longer now with better general medical care, and hopefully their death is more comfortable now with good palliative and hospice care. Families and doctors still don't want to take away hope, though thankfully now some are realizing that hope is so much more than hope for a cure, and that honesty, while difficult, is the best course in discussing prognosis.

July 4th. Independence Day. 70 years ago, a giant of a man bravely faced an illness he didn't understand. Yesterday, a giant of a lady faced an illness she didn't understand. Both placed the needs of others ahead of their own. Both will ultimately share the same fate, as will we all. I pray that we honor those who have given their lives for the freedom of this country, and those who have dedicated their lives to others, and all those who have faced or are facing the final chapters of their lives.

Monday, June 29, 2009

The last few times at hospice IDT (Inter-Disciplinary Team) meeting, which is a weekly review of our hospice patients by all members of the team, a number of interesting comments were made.

One nurse, who usually puts her cell phone on vibrate during patient time, forgot. During her visit, she got a call, and the ring tone struck a cord in our patient, who stood up from her wheelchair and did her version of the "happy dance".

Another patient was having issues with pain management, but absolutely would not consider skipping a planned camping trip with her kids. She is a young mom, and says that it is more important to her to create memories for the family than for her own comfort. Self sacrifice is the value, and the trip her goal. How much more can any of us ask?

A third patient had been unresponsive for the better part of 4 days. As the final family member arrived at the bedside from out of town, the patient opened his eyes, and though saying nothing with his voice, looked at all his children one by one, and then closed his eyes, and took his final breath.

Yet another patient was on his second marriage. His new wife had a dog who did NOT like this man. Yet, as the patient approached the end, the dog started hanging around the patient's room, and on his last day on earth, the dog actually jumped in to bed and slept with the man until he died. (Reminds me of Oscar, the hospice cat from Rhode Island).

There were two other "fortunate events" this past week, but they did not happen at IDT.

There was a physician in my community who has recently developed an interest in end of life issues (after many years in practice). I had spoken to him several times to help him along his learning, and this past week, I had the privilege of visiting his wife and him to assist with her hospice care for terminal pancreatic cancer. He shared that he was not sure if his interest was God's way of preparing him for his wife's illness, or for his career options after she has died. I told him it was surely both.

The last story is about another "God moment". I do a fair amount of home visits for hospice patients, and occasionally have a few spare moments between to catch an errand. I almost always stop off at the local dry cleaners on Mondays after I am done, but one recent day, I had a few minutes and went there in the early afternoon. There was only one other car there, and a lady inside. I was waiting for my things when the door opens and in walks a doc I have known for a fairly large number of years, but hadn't seen for several. He introduced me to his wife, and somewhat sheepishly told me that he and she had recently come back to the area from out of town, and she had been working in hospice where they had been. As they drove, they were discussing that perhaps he would try to catch up with me to see if there were opportunities. They decided to stop at this particular dry cleaners because they had been elsewhere but didn't care for the service. So there they were and I walk in. My fellow doc still is amazed by the "coincidence", but I am not surprised in the least. I am in awe, but not surprised.

Final thought for today: a husband of a dying patient described his role as "goalkeeper/genie". He said he will keep out all attempts to disturb his wife when she needs to be quiet, but he is the genie in the bottle with unlimited wishes he will try to grant her while he can.

I'd love to spend the next few hours writing about what I think this all means, but honestly, I don't think I could begin to do it justice. So I will let the stories speak for themselves.

Saturday, June 20, 2009

There was a family who lived a simple, lower-middle class life back in the 80's. One of the children was a bright boy, and he went off to school in Chicago. He struggled to adapt to life in the big city, but eventually was able to learn to get along. The boy's family came to visit him once, which was a big deal for them. It was a long drive, and they weren't used to the area. The boy's father managed reasonably well, but was pretty nervous about the whole trip. When he was nervous, he liked to walk, and after they made it to the boy's apartment and got situated, announced that he needed to calm his nerves with a solo walk.

The boy knew his father might not know the ways of the city, and made sure he clearly told his dad not to go more than 2 blocks east, 3 blocks north, etc. so that the dad would not stray in to an unsafe area. The dad acknowledged the instructions, and set off.

After quite some time, when the father had not returned, the boy became concerned. He went looking for his dad (remember, this is the 80's, no cell phones). He was surprised to find dad a block away, happily washing the son's car in the parking lot at the end of the block. As he watched, something occurred to the boy: this was a city parking lot, there were no hoses, and in fact, no spigots. Where had his dad got the water to wash the car?

The boy asked the father, and the dad just smiled, and opened the trunk of his own car, where there were multiple gallon jugs, filled with water. The dad had driven 6 hours with water in his trunk, to see his boy and wash his car.

Hospice folks are like that. They would gladly go out of their way to do things for their patients, and not try to take credit for it either. Generous to a fault. Fathers and hospice workers. They have a lot in common.

Sunday, June 14, 2009

I am often amazed at things I hear from my hospice patients. This past week was no exception. One particularly striking discussion I had was with a young man dying of pancreatic cancer. He has two children, one is away in college, but the other just graduated from High School. This was his youngest, his daughter, his "baby girl" he liked to call her. She is getting ready to begin a new chapter in her life in so very many ways, not the least of which is learning to prepare for life without her daddy. Her party was scheduled for a Saturday, and as the day approached, the weather was not looking promising. There were over 100 guests expected, and the plans included many of them being outside under a tent. When the day finally arrived, it was pouring rain all morning. Providentially, one hour prior to the party, the rain stopped. The party was well attended, and though the man was exhausted by the end of it, he was very happy for how it turned out. About a half an hour after the party, the rain resumed, and continued the rest of the night.

As the man was describing this, he told me he had looked online at the weather radar, and that morning, had seen a "hole in the clouds". There was an area of the storm system that was clear, and it appeared as though this hole in the clouds might pass over the area just at the time of the party. He said he knew that is how it would work out, and shared a story of another time he witnessed a hole in the clouds. Apparently, as a young man, he had doubts about his direction in life, and spent some time on retreat at a monastery, high in the mountains out west. While there, he was walking a trail, and was able to see the monastery from high up, and saw shadows of clouds approaching the grounds. As the shadow reached the main building, the cloud split in two, and the shadow passed the retreat center on either side, without darkening the monastery at all. The cloud hole closed after it passed by, and he believed that he had witnessed a miracle meant specifically for him.

For him, it was no surprise that his daughter's party would have the same miracle. In fact, he told the hospice team that he "knew" that his time would come soon, and that he would pass through a hole in the clouds to heaven.

He died on a day that was cloudy all day, except for one hour. Guess what time that occurred?

Wednesday, June 3, 2009

I had a call today from one of the hospice nurses today. Seems one of the patients in our hospice had died, and his physician was out of town. He practices in a large group, yet no one in his practice would sign the death certificate. The physician would not be back for 10 days, and the deceased had arranged for cremation. Now, of course, in Illinois at least, you cannot be cremated without that piece of paper certifying that you are, in fact, truly dead. (To quote the Munchkins, not merely dead, but really most sincerely dead.) I had seen the patient once on a home visit for hospice, so I agreed to sign this document and allow the family to proceed with the necessary rituals surrounding their grief.

Now, I fully admit that I may be more sensitive to this issue than some, but it comes as a result of my own personal experience. When my mom died just over a year ago, she had been under the care of a family physician who knew her for a long time. Unfortunately, this doc had endured all the change and hassle he could, and retired from clinical practice to take a teaching job; this occurred at the same time as mom needed to go in to a nursing home. The nursing home doc was happy to take over her care, and when her terminal event (aspiration pneumonia) happened, she was admitted to the hospital under the care of a hospitalist. This particular hospitalist group worked on a one week on at a time model. Mom was admitted to the hospital on a Saturday, and died the following Saturday. The hospitalist who cared for her during her terminal illness then left on a scheduled vacation for several weeks, and so was unavailable to sign the death certificate. Her previous physician had already left the community for his teaching job, and the nursing home doc was only in town once a month, traveling to other nursing homes the rest of the time. So here we were, grieving the loss of our loved one, and as we finalize arrangements, the funeral director informs us that no one has agreed to sign the death certificate.

We felt that this was a significant blow to our fragile states when we needed it the least. Of course, we could have waited for the hospitalist to return, but we were hoping to deal with the paperwork, insurance, etc., while the whole family was gathered, which would not be possible if we waited. So I pulled rank on the previous physician's group practice and persuaded them to have one of the partners there sign. Using guilt as a motivator and complaints as a tool, I was able to get someone to get the document completed and we were able to get our mom's affairs in order. My brother still seethes about this today, viewing it as adding insult upon the injury of grief. I admit I cannot disagree with him.

So when I saw this from the other side, it makes me wonder: what are we docs afraid of? Will the deceased sue us? Do we think someone is counting the number of deaths we attend, and if too many, we will be investigated? Are there simply docs out there that are truly out of touch with the needs of the surviving family members? Or who are just unwilling to do anything if it "isn't their patient"? (the latter attitude does exist, but I find it amusing since the doctor-patient relationship is becoming less valued by patients and payers. Possibly more on that in a future post). I suspect a combination of these is behind the issue.

I had occasion to speak with the senior physician in that practice and asked him if they had a policy about signing death certificates for each other. He said that they did not, but that most of them would be willing to do so IF THEY COULD REVIEW THE DEATH RECORDS (not the same thing as their own chart). Now, with all the different types of medical records systems, and documentation differences, most attending physicians get at best a summary of the final events, and probably this isn't enough for these particular docs. He did mention a SINGLE CASE wherein one of the (now retired) partners signed a partner's patient's death certificate within 10 hours of the death, only to find that the cause of death was being disputed due to some possible malpractice issue (a broken off piece of a catheter of some sort). This was later construed by the plaintiff's attorney as an attempt to conceal the truth. This evidently put such a bad taste in the mouth of the group that they were all gun shy about death certificates still, 10 years later. In my discussions with colleagues, this is the only case I have heard of with an issue surrounding certifying that a patient is really deceased, and what they died of. I have, however, run in to other situations where cremation was requested and the attending physician was unavailable and the covering physicians refused to sign. How absolutely tragic for the families. I know. I've been there.

One of the things I truly love about hospice and palliative care is that we get to be patient centered. I only wish all physicians had the privilege of that mindset.

About this Blog

The main reason I write this is to share these stories. Hospice has been called "Medicine's greatest secret". This is my humble contribution to changing that fact.

The stories here are all true. The detail may be altered in order to maintain privacy and confidentiality. The changes made do not alter the facts of the stories, only characteristics that I think could lead them to be linked directly to the people involved.

Oh, and the Standard Disclaimer: I work for a healthcare organization, but what you see here is mine alone, and does not represent the views of my employer.

About Me

I was in a traditional office practice of Family Medicine for 19 years, then found my passion, which is Hospice and Palliative Care. I have been working full time in that area since 2004, doing house calls and administative work. I am now leading efforts to develop and support programs for a Catholic Healthcare System related to these areas.